MS is an individualized disease that requires unique care
An important lesson I learned while serving in the Army applies to MS
Just before a deployment, all the teams in my military unit received a large supply of medical gear that included two medical backpacks, or aid bags. As the team’s medic, I elected not to bring them, because I already had a bag that I liked, and the new ones looked similar to the three-day assault packs that everyone on the team carried. That notion ended up paying off not long after the tour started.
During an incident late one night, I initially worked from a fanny pack that stayed attached to me at all times. Once the scene was safe, I sent a teammate to grab my big aid bag from the truck. We were operating with another team on that mission, and their medic did the same. I was handed my bag right away, but it took three tries for the other medic to get his because people kept bringing back assault packs that looked almost exactly alike.
The lesson I learned, which I passed on at every opportunity, was that your aid bag should look different from every other bag in the truck, especially in the dark. Not long after my diagnosis of multiple sclerosis (MS), it occurred to me that the same lesson applies here, too. If you have this disease, your care has to look different from any other care that you might receive.
The first thing that comes to mind is medical care. A neurologist may not have been the first doctor you went to when you had noticeable symptoms, but it should be the one you regularly see now. Preferably, your neurologist should be a specialist in MS. MS is not a routine disease, and its treatment can’t be, either. The medications that slow the progression of MS or provide relief from its various symptoms are often distinct. Ideally, they should be recommended and prescribed by a doctor with a distinctive specialty.
The same can be said for the rest of your care team. For example, the care provided by your physical therapist, pharmacist, and mental health professional should be unique to your condition. That kind of care cannot look like “every other bag in the truck,” or you’ll almost certainly be handed the wrong one.
Your home also has to look a little different to support your needs. On the outside, a wheelchair ramp sets our house apart from the other ones in our neighborhood. On the inside, a roll-in shower, bed rails, and other gadgets accommodate my needs. Trip hazards aren’t the concern they were before I started using a wheelchair, but for a while, our house had bare floors. They were the bane of my existence, but it’s nice to see rugs making a comeback. It might not seem like it sometimes, but making your home accessible is specialized care.
The supportive care that you seek should also be distinctive. A support group for left-handed people who tell bad jokes might be fun, but probably won’t help with questions or concerns about MS. That wasn’t meant to imply that you should only have friends who share your condition, but just like with aid bags, finding the right one quickly can be important.
I was diagnosed with MS just over 11 years ago, so you might be tempted to think that I have everything figured out. What I’ve mostly figured out is that I can’t do this all on my own. The bag that holds the tools that make life with MS better has to look as distinct as it is. That makes it easier for anyone providing my care to locate it easily, even when we’re looking for it in the dark.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Stephanie Richter
Hi
Thank you for your article. I have a dear friend who is struggling with MS and getting a working program to help him deal with all of the many many aspects that living with MS entailes. I am constantly researching info for him so I am very gratful o all of the first hand experiences I come accross. Thank you
STephanie Richter
Benjamin Hofmeister
Researching things is the best thing you could possibly be doing Stephanie! Everybody with this disease has to find out what works for them. I didn't get this at first and was so frustrated and depressed when I couldn't find myself using someone else's map.
Natalie Sirota
Thanks so much for sharing, Ben. I always appreciate your take on navigating life with rare disease. Thank you also for your service to our country. Whenever you are ready to start that support group for left-handed individuals who enjoy telling bad jokes, I know just the guy (my hubby) to join you! ;)
Benjamin Hofmeister
Thank you and you're welcome Natalie! I do tell some very bad jokes, just ask my children. I'm not really left handed though. I've always used my left hand not quite as well as right but when MS made my right hand useless it wasn't that much of a stretch to be an unwilling Lefty. When I was teaching on the Range, I taught myself to shoot proficiently with my left hand so that I could demonstrate for any lefties in the class. A visiting instructor saw me do this and asked me if I was amphibious. I smiled and said I didn't think so and thanked him for not calling me ambiguous, or androgynous.